still at the hospital

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still at the hospital

Postby mrsjoh » Sat Apr 18, 2009 7:58 pm

well, it's going on week 5 or week 6, I am not sure. anyway Jasper's cranio surgery went super!!! after being on nec watch for weeks (bowel rest no food etc) he was cleared ok for surgery, did the surgery, as his sutures were fuses together (left coronal and lamdoid - very rare surgeon never saw it :( before ) they did it vie endoscopic,, removed about a finger width of bone so that the brain and skull can grow... got his helmet!so cute, dh hates it, butI have learned to like it at least , will be on till he is about a year (omg is this mylife? wow I have these moments every now and then,,, hmmm, I feel like I am on some weird valium drum... so much stuff and I feel like I sucked on a million helium balloons some days.. )

so he is doing super with that, and then getting him back on his super hicalorie feeds (bm is 20 cal/oz, due to his chd he needs to be on 32 cal/oz diet, so getting him back onthat has beenchallenging, hence the longer than aticipated stay... so J now has some infections, uti, and yesterday they said kidney stones, but today someone from some dept I have never seen said no... no kid stones, but maybe they meant something else, will clarify on tues, weekends, tough, most people off, things don't get done...

ok , so I don't expect to have a date to get out of here, but slowly and surely we will get J out of here!!! so help me! :) gosh there are SO may spelling errors. .. just wanted to give an update, even an incoherant one at that, THANK YOU LADIES! for all the comments, this is such a great part of my day when I get to thecomputet room and "talk" to people :)
jasper in his stroller on Easter Day taking a walk around the hospital! His new helmet has a "jungle theme" we picked out :-)
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Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
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Postby mamalynn » Sat Apr 18, 2009 9:08 pm

that is awesome about the surgery! he looks so precious in his helmet! i'll have to post pic of pj's ocean themed SMO's (foot braces) when he gets them next week. it is great that you can take him for walks around the hospital. i hope his infections clear and that he can be home with you all soon. bless his little heart and yours as well. you are such a great mama! thank you for the updates!
michelle 41, dh 44,
pj 5 diagnosed with down syndrome & av canal defect of the heart (repaired 2007)
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Postby dixiechicken » Sun Apr 19, 2009 6:38 pm

It's so nice to see an update!! He looks so cute in the helmet. Glad to hear the surgery went well. You will make it home!!!!

Mama--I'm jealous PJs braces have an ocean theme. Wade's are just plastic with sportsballs on the straps! :?
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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Postby PixieB » Tue Apr 21, 2009 6:21 pm

Long hospital stays are horrid. I hope he kicks the infections soon and puts on some good weight gain :)
Will they do new helmets for him as he grows? Give you the opportunity to get new designs? :) May have to have some fun making funky bonnets to fit over it in lots of bright and vibrant fabrics :)
Talia Grace: born Friday 13th of July, 2007, at 27w4d gestation, 700g/1.5lbs. Nursed for 4 years
and Violet Joy: born Thursday 19th, VBAC waterbirth, 39w2d, 3.35kg/7lbs 6oz, still a booby monster, just shared it with her big sister for 18 months.
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Postby momtosix » Wed Apr 22, 2009 10:49 am

Thank god he is doing well he looks adorable.I like the helmet!!!!!!
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